MPIP: Melanoma Patients Information Page

The MPIP is the oldest and largest community of people affected by melanoma hosted through the Melanoma Research Foundation. It is designed to provide support and information to caregivers, patients, family and friends. Once you have been touched by melanoma—either as a patient or as a family member or friend of a patient—you become part of a community. It is not a community anyone joins willingly. But if you must be part of this group, you will find no better place to find the tools you need in your journey with this cancer, and the friends who can make that journey more bearable.

The information on the bulletin board is open and accessible to everyone. To add a new topic or to post a reply, you must be a registered user. Please note that you will be able to post both topics and replies anonymously even though you are logged in. All posts must abide by MRF posting policies.

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Jenine's picture
Replies 1
Last reply 2/8/2017 - 11:34pm
Replies by: _Paul_

Hello friends,

My husband has been receiving Keytruda every three weeks for 21 weeks with a shot of Peg once a week.  His PET scan last week showed no new tumors and his existing tumors did not grow in size.  Has anyone had an experience with a like treatment?    We were told to give the trial more time.   Any thoughts on response time or effectiveness?

God bless,

Jenine

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laulamb's picture
Replies 10
Last reply 2/8/2017 - 11:13pm

Ok fellow Melanoma Warriors ... I have my 3 month follow up scan tomorrow.  Had CT scan in November when an indeterminate 4 mm left lower lung pulmonary nodule was seen.  Diagnosed Stage 3a April 2016 ~ completed 4 doses of ipi at 3 mg and did 1 maintenance dose (will continue maintenance doses for a year).  Please keep me in your thoughts, send good vibes, prayers, do a dance ~ whatever it takes to make sure this hasn't grown or multiplied!! 

Peace and Good!
Laura

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Nicklindner's picture
Replies 10
Last reply 2/8/2017 - 7:50pm

There have been a quite a few questions related to this combo lately and will probably only continue to be more. I thought it might be helpful for everyone to see what the response rates look like from members on this board. Who has taken this combo?  How many treatments of the 4 did you manage?  12 week scans show stable or tumor shrinkage? Did you need to move onto anything else after just opdivo?  Were you considered a full responder?  

For me personally it is one thing to read clinical studies but another thing entirely to hear personally from the Warriors who have gone through this journey before some of us newbies.   Being 33 diagnosed 2 months ago with stage 4 I can't get enough positive news and hope from this site unfortunately I am sure there will be many others like me, new to this site, that could use that hope too  

Thank you!

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Replies by: Anonymous, JustJaren

Hi All!

RIght now, after the WLE and SLN removal, the SLN came back with '3 to 4' cancer cells in the subcapsular region. Of course, the surgeon now recommends an inguinal lymph node removal. 

1.- I am having a hrd time committing to this surgery, knowing the original lesion was 0.86 with a mitotic rate of 1- I have an 80% chance of no other nodes being involved- should I torture my body and risk major complications for an extended life? (statistics say recurrence within 24 months as opposed to 36 months with the surgery)

2.- If I DO take the surgery- what were your experiences for recovery- specifically returning to a desk jobn, how long before you can drive, etc. 

 

I am overweight and know this increases my chances of complications significantly- BUT I am MOTIVATED during recovery- I had a partial knee replacement last year that I was off th emeds in days and back to work. I relaize this is very different, just lookng for some experiences/article references regarding NOT getting the surgery, patient experiences, etc. 

Much love to everyone!

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Hi all - Came on here last night to post but ended up in a river of tears - for Rita (Charles), for Judy (Vince) and all the newcomers ... so many new cases - it's pretty distressing. I feel for all of you!

For what it's worth, I'm going to update on my sister Leisa.

Brain MRIs and thoracic CTs are running about 6 weeks apart and latest CT report is in. Previous showed major shrinkage everywhere and several organs were already clear. Latest scan reveals more clear organs, now including pancreas and lungs. The lungs are a big one - at height of progression, there were about 8 tumours showing - all that's left now is an area of partial lung collapse.

Liver and spleen are still showing multiples but all have shrunk. Bones are also still showing multiple "sclerotic lesions" but predominantly in the spine (no surprise, it invaded just about all of the vertebrae) - T12 is totally collapsed and T5 is partially collapsed (she lost two inches in height when they went). Report now is not even noting other bones that were compromised (several ribs, right arm just below shoulder and right femur had large masses), so, we're taking no mention of those as good news.

At one point, a tumour in the spleen was so large, they couldn't tell if it was growing from the spleen or the kidney and both kidneys were "lighting up" but they're now referring to these areas as "bilateral renal cysts" ... there has been no change in their size. Considering everything else has shrunk or resolved, I have no problem believing these are cysts :)

And last - no new mets - no progression, only regression.

She's now halfway through a clinical trial of 24 infusions of nivo only and left yesterday for a winter getaway in Puerta Plata - yayy!! That's the first time she's been well enough to travel in two years.

So, we're "quietly" hopeful but always aware of how tenuous a great response can be. I'd love to know that NED is in her future ... but all I do know is that - for all of us, mel patients or not - all we have is today, tomorrow is unknown.

Best wishes and thoughts going out to everyone on here - please, be as well and happy as can be!!

Barb

 

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dori's picture
Replies 5
Last reply 2/8/2017 - 6:25pm

Hi everyone,

My best friend was just diagnosed with melanona. I don't know all the details but she is devasted. She is having an assessment and consultaiton tomorrow with a doctor.

I have offered to help and do research on options for the best treatment, best doctors that specialize in melanoma.

We are from Toronto Canada but want to know about any special clinics in the US as well. I heard the Mayo clinic is great?

I would appreciate any feedback as this would truly help my friend.

 

Thank-you

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Bmine102793's picture
Replies 9
Last reply 2/8/2017 - 6:10pm

Mri on fiance came back clear besides a small calcification on front lobe which could be do to many years of sports but sense he is currently diagnosed 3A till we get petscan results tomorrow they will continue to monitor it. Now the doc said he wants us to go to clevland clinic for better melanoma care and suggested that Yervoy(ipilimumab) while more toxic than other treatments can improve of all survival but 53% of patients who did the treatment dropped out due to toxticity. I would just like some insite on it please

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Shelby - MRF's picture
Replies 6
Last reply 2/8/2017 - 5:46pm
Replies by: Anonymous, Shelby - MRF, jsnew, Ed Williams

Dear MPIP Community:

Cardinal Health is conducting a study in melanoma and they'd like to reach out to you for help. Please see the message below to see if you qualify and learn more about the research study:

 

Do you have Stage II or III melanoma? Was your melanoma surgically removed? Are you currently employed? We want to hear from you!

Cardinal Health is currently conducting a Melanoma Study.  The purpose of the study is to better understand the impact of melanoma on a patient’s work-life balance. They will collect information on how melanoma may affect your ability to work, your use of health care services such as doctor’s offices or the emergency room, and how you may feel on a day-to-day basis.

If you agree to participate, you will complete an online survey about the topics listed above. You will be asked to complete the same survey 5 times (once every 3 months). You will be notified by email 3 months following the prior survey and will have up to 7 days to complete each survey.  Each survey will take approximately 30 minutes to complete. You will receive $50 for each of the surveys you complete and then an additional $50 bonus once you complete the 5th and final survey.  In total, if you complete all 5 surveys you will be compensated $300 for your participation over the course of the project. 

Please click HERE see if you qualify.

 

Thank you for your consideration and Happy Holidays to you and your families,

Shelby - MRF

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Jubes's picture
Replies 11
Last reply 2/8/2017 - 5:19pm

Does anybody else on keytruda have terrible mech back and shoulder muscle pain? Thanks

anne-Louise 

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Daughter of Patient's picture
Replies 4
Last reply 2/8/2017 - 4:28pm
Replies by: jahendry12, KAF, MikeW, Tim--MRF

My mother was just diagnosed with malignant mucosal melanoma of the sinuses last week. She lives in the north suburbs of Chicago. She has an initial appointment with Dr. Jon Richards on Monday. Any recommendations for a doctor to obtain a second opinion in the area? Many thanks in advance.

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Anonymous's picture
Anonymous
Replies 4
Last reply 2/8/2017 - 3:05pm
Replies by: D1983j, Sophietx, Janner

I've had a stage 1 melanoma last year. Everything has been fine. Today I went for my 3 month check and of course had to get a biopsy. I thought I might be lucky and not have to get anymore lol anyway she said she wasn't worried but since she's would be releasing me for 6 months now and it was the only mole I had that looked different than my other moles to remove it. She also mentioned to prevent it from being something later. The mole has always been there and it is darker than my other miles but not anywhere what I had before. It's never changed or grown. I guess I'm trying not to freak out. I'm assuming my worry should be less because of everything she said and she basically just offered it to me as more precaution but still the worry is there. Thoughts! Thanks!

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Anonymous's picture
Anonymous
Replies 2
Last reply 2/8/2017 - 1:29pm
Replies by: AshleyS, Anonymous

I'm not sure what to expect from posting this, but felt compelled to share what I'm going through if only for the cathartic act of writing it down somewhere.

This past December, at 6 weeks pregnant, I went to the dermatologist to have a small pink spot (what I thought was a pimple or ingrown hair) looked at.  The derm suggested it may be cancerous, but that if it were, it would not be melanoma given its appearance.  None the less, he attempted to remove the whole thing.

Five and a half weeks later (yes, that is how long the lab results took), I got a call from him, saying it was cancer.  I asked what kind, and nearly dropped the phone when he said melanoma.  Apparently, I am one of those rare people with non-pigmented melanoma.

I went in that day to discuss the pathology report.  Breslow depth of 0.8mm, clark level II-III, no ulceration, no mitosis.  T1a, based on the available information.  They weren't sure, however, if they had truly removed all of it with the initial biopsy.

He sent me on my way with his recommendation for the WLE, as well as an ultrasound of the nearby lymph nodes in my groin.

Terrified, I did the ultrasound - it came back clear.  Then, the WLE.  I did not have the SLNB at the time, as it was not recommended based on my initial staging (but now I'm wondering if I should have, especially with the pregnancy!)

Now, we are still waiting for the results of the WLE report.  I am 15 weeks pregnant, and reading about how much more dangerous this stuff can be while pregnant (though admittedly, there seems to be a great deal of disagreement).

I am in shock, and terrified for myself and this poor thing growing inside me.  I know that T1a should be uplifting, but we still don't have the full lab results, and I've read that an ultrasound can have a 40% false negative rate. 

How do you live with the daily fear that this is spreading and they simply haven't seen it yet?  How do you bring a child into this world, when you aren't sure if you'll be around to take care of the little one?  How do ensure you catch it early if it does spread to the nodes, so you don't wake up one day with tumors all over when you were supposedly T1a? 

I feel so lost and angry and scared.  This is my first pregnancy, and it is nothing like what I imagined. 


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Anonymous's picture
Anonymous
Replies 4
Last reply 2/8/2017 - 1:12pm
Replies by: Anonymous

Hi, i wondered if I could possibly get some clarification. My hubby is stage 3a. There is no treatment at this stage in the UK, also no trials that he would be suitable for as the minimum requirement for eligibility seems to be above 1mm metastasis. Hubby was 0.5mm. 

I guess I just wondered if there was any other way to get something like ipi at this stage? Whether Self funding maybe through a private oncologist? Or is it not even available that way? Don't know why I'm asking really as couldn't even afford to self fund if that was a possibility probably - I expect it would cost tens of thousands. 

God I bug myself with questions!

Thank you all x 

 

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Sophietx's picture
Replies 5
Last reply 2/7/2017 - 10:33pm
Replies by: Sophietx, Janner, UBContributor, Anonymous

Hello,

I had Melanoma in situ in Nov 2016. WLE and clear margins. I still get acne sometimes on my body and face. A pimple showed up about 0.5 cm near the scar. It showed up overnight. And it looks like it's healing now. It has been few days. How do I tell reocurence? Or satellite mets etc? Thanks 

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Jenine's picture
Replies 1
Last reply 2/7/2017 - 8:58pm
Replies by: Bubbles

Hello friends,

My husband has been receiving Keytruda every three weeks for 21 weeks with a shot of Peg once a week.  His PET scan last week showed no new tumors and his existing tumors did not grow in size.  Has anyone had an experience with a like treatment?    We were told to give the trial more time.   Any thoughts on response time or effectiveness?

God bless,

Jenine

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